And the beat goes on...

Deep Griha Blog
'On with the dance' Hans always says (and it took me 2 months to find out where that sentiment came from). And that's just it: the dance at Deep Griha Society will continue long after Sara and I leave - which is in 3 days' time. We've only been here two months and for my part I can say it's gone like so many autorickshaws - quickly, and at times stomach-churningly! But already this place feels so... 'normal', whatever that is, and it will be strange to leave. But you've all heard that before, countless times no doubt, as volunteers come and go in an endless cycle of fearful beginnings and tearful goodbyes. I really don't know how the hell staff keep up with and humour the volunteers who express the same sentiments as those in the same boat a few months previously. In fact there's a lot I admire about the peope who work here. They've heard us complain about the most insignificant things and only smiled knowingly in response. They work their asses off for the good of others.
Yesterday, we cleaned up the creches at Tadiwala Road. It felt good to get my hands dirty and see the results of our work. The new Link volunteers got right in there and scrubbed and painted til they harldy looked like the same rooms. That's when I realised - this whole affair, working for NGOs - it really shouldn't be about 'self'. Working as part of a team, whether scrubbing all manner of nasty things off floors or having the phone hung up on you as you try to fundraise for the 'Wake Up Pune!' campaign, there's no room for ego. The beat will go on if you leave tomorrow, although you can at least feel confident you did your bit, however insignificant that might seem. Not that it ends with one little trip to India. Watching DISHA at work, getting involved with 'Wake Up Pune!', giving a presentation to a very enthusiastic group of Girl Guides at Sangam - all these things have ignited some fire in me about HIV/AIDS awareness, so I plan to take my attempts at dancing Pune-style back to sunny Scotland (and they HAVE had more sun at home this summer - bastards!).
I always think it's a shame that the blogs here can be a little single focus... I guess it's because HIV/AIDS is such an emotive issue. But for the record I'd like to point out that DGS does some amazing work that's not related to this (saying that, Neela has taught me that all the issues dealt with here are inextricably linked). But right now the hot topic for some of us is the campaign (which finally looks like it's going to be a success) to kick Pune's ass into gear and stop the stigma. Shame I'm missing the rock show - some of the girls here have seen the ridiculous way I conduct myself when there's a bit of the heavy stuff playing. I'm afraid I'll have to deprive everyone of the Dreadlock Windmill, which is a great way of getting some elbow room in a big crowd (which of course, there will be at the show in November!)...
Well, off I go then, dancing to the beat of the Hindi films I've become hooked on (or perhaps a little motivational rock). Keep up the good work y'all!
Mo Ford (DiA).

The Chaos Within - Time to Deliver

I am in Calgary.

The conference in Toronto is over. I am here to meet with Rachel Parker, DISHA volunteer and friend who came to us through the girl guide centre SANGAM in Pune. Rachel's parents also operate the Parker Oak Fund that have funded the DISHA and Sahara Aalhad projects and the Parker Oak Fund helped fund my airfare for the conference. Also here is Laine Racher, DISHA volunteer who helped fund the rest of the airfare. It was so good to see them both again.

The theme of the conference was time to deliver... enough talk, it is time for action... I learnt a lot at this conference. The approach to HIV/AIDS in Tadiwala Road and Pune will not be the same as a result and Dr. Jasmine from Project Concern International that met up with me in Toronto agrees. We can do so much more!

This is one 'positive' from this conference.

Another 'positive' was the opportunity to network and learn from other grassroots intervention projects in India and around the world. Tini, my Malaysian transgender friend who is the Asia Pacific coordinator for Asia Pacific Network of Sexworkers (APSNW) is a case in point. She will be in Delhi next month and we hope to coordinate a visit to Pune.

This should be interesting for Deep Griha! We cannot ignore the transgender community amongst us. Sahara Delhi has shown us that the HIV prevalence rate in the TG community is 45%. They must be included. Heterosexual males continue to have unprotected sex with the TG sex workers and while society would rather ignore this and pretend it does not happen, it does!

Tini will prove to be the antithesis to the perception of the TG community in India... perceptions that are shared by many at Deep Griha Society. I have no doubt that if we allow for it, she will help us at Deep Griha approach this issue sensitively.

The conference was also frustrating.

As you may have gathered from my previous blogs, there exists a gap between the research and the the implementation on the ground, and this needs to be addressed. Again, with a HIV/AIDS coalition in the city we can hopefully use the research that is being done to form the basis of the interventions that are required both at community level and in the city.

Finally... I wore my HIV Positive T-shirt at the conference. This t-shirt supports the campaign that is supported by Nelson Mandela. Very simply 'HIV Positive' is emblazoned across the front. During the conference no one gave us a second look... but yesterday, Saturday morning with the conference over, as I walked down the same route I had done for a week I kept getting these looks that possibly amounted to: 'The conference is over. Why the fuck are you still here.'

I say possibly, because I could not be certain, just felt like it.

Then I got to Calgary...

The girls that I spent the evening with were a little concerned about the t-shirt... its a redneck city, how will people react etc. I immediately offered to change. They said no.

The taxi arrived to take us to a club.

The driver saw me and said, "I will take everyone except the guy who is HIV+."

The girls were mortified. I smiled. Time to Deliver...

The driver was a Pakistani doctor waiting on his licence to practive and his excuse for turning me down was... "I'm a doctor and I know about these things."

I changed my t-shirt, amidst protests - I have experienced enough discrimination to choose the battles I fight - got back to the cab and asked him if he minded me sitting next to him. The girls had already ripped him apart really, so he was quite apolegetic. I then engaged with him. He spoke about how he was stigmatised against as a doctor from Pakistan and how he had been reduced to driving a cab because his qualifications weren't good enough, although he knew so much about medicine etc... I then asked him how he felt... and he saw where I was going. We had a good chat for the 15 minute drive or so... and he shook my hand as I got down...

Time to deliver... who is going to deliver?

The Bill Gates and Bill Clintons of this world or the Neelas and Nevilles, the Tinis and Shantanus, the Latas and Mayas, the Avinashes and Meeras, the Pauls and Meetas?

Whose responsibility is it not to stigmatise against an HIV+ person?

Whose responsibility is it to hold local and national governments accountable for how they approach issues like HIV/AIDS and poverty and gender violence?

Whose responsibility is it to support the work on the ground with more than platitudes and empty words?

Go look in a mirror...

Back at Home!

Hi Guys,
I can't believe that it's been nearly weeks since I left India! It's been an interesting 2 weeks though! When we all got back to Edinburgh, we were searching through the crowds for our parents. I saw my mum waving - I ran up and gave her a cuddle - it was great, me, mum and dad had a group hug - it was so cute! I had a Costa coffee!! It was great. Driving down the motorway - it felt like I had never left, it was a wierd feeling. I got back home, and was told that I had to pack up to go to our house in Fife - very rushed! But it was great to see everything. My parents took me out for a meal that night, and I had haggis for starter and sirloin steak for bloody main course!!! WOW!!!!

Waking up the next morning was dead wierd - I was in my own bed with a thick duvet over me - how strange is that! It was time for church, so I got all my photos ready to take with me, and when I got there, I was shaking so much because I was nervous about seeing everybody - but the hugs I got from everybody were amazing. My church have just had an extension built, which looks amazing - it's huge! I got a welcome back lunch from the church, which was a lovely welcome back.

It's wierd being back - nearly 3 weeks on and I am due to start college doing Highers (English and Biology) and I've got a job at B&Q on the checkouts as a sunday job. I love being back.

Just to warn you Hans, I am planning on coming back next summer for a couple of months!!! I can't wait!!!

See you all then!!

- Philip Ross

The Chaos Within - XVI AIDS Conference II

Last night I attended a session on 'HIV/AIDS and Poverty: Breaking the viscous Cycle.'

I expected that India would turn out in force to this session. There are almost a hundred delegates from India here.

I forgot it was the 15th of August. Everyone was off for a flag hoisting ceremony... or so it seemed.

Right through the presentations at this session on poverty and HIV/AIDS - none of which were from Asia - they spoke of the viscous cycle poverty and the problem of access to funds. The mechanisms in place that make it difficult for international and national funds to be accessed by grassroots community based organisations... not one of the panel spoke of corruption.

I thought of Sahara Aalhad and PSACS - Pune AIDS Control Society - demanding a 20% kick back... and I asked why the panel had failed to address this very real, albeit unpleasant fact when it comes to the access and implementation of funds... of course everyone then wanted to talk about corruption. Don't get me wrong I think NGOs have had their role in contributing to the corruption. Let's be clear, transparency and accountability are relatively recent developments in the NGO sector, DGS included.

The Indian response here - I may have missed it - appears to be low key. One presentation spoke of low HIV prevalence and cited the 2005 study of 5.2 Million estimated cases of PLWHA in India. I am the last person to focus on numbers. BUT UNAIDS pushed up the estimate to 5.7 million in June this year. We lead the world as a nation and there is no fucking point to keep patting ourselves on the back about the fact that we are a low prevalence country. The lady from Delhi wasn't too pleased.

Its frustrating. I am not here to point out everything that is wrong with the Indian response. There is a lot of everything that is right too. BUT we must guard against complacency and how we plan and implement our response to HIV. Every time they talk shit I am reminded of the 58 DISHA clients and all the clients at Sahara that I have had the privilege to work with and befriend - including those that continue to frustrate us with their attitudes to nutrition, SAM adherence and IGP.

The contexts are complex, granted, but we know on the project that the contexts are complex... And our response is with the complex contexts in mind.

This afternoon I listened to a presentation from B J Medical College on Repeat Pregnancies among HIV+ women on the Sassoon PMTCT - prevention of mother to child transmission - programme. Yes, they are here too.

Again, all that she spoke of reflected the experiences of Shobha. Loss of a child, loneliness, lack of planning with the new birth... I agreed with all the findings. And said as much. BUT what astounds me is that if there is this extremely important research happening in our back yard, why haven't we been brought in as HIV/AIDS NGOs to discuss the findings, preliminary or otherwise, so that we can together plan strategic intervention programmes to address the issue.

We are the agencies on the ground, and there is a gap between the research and the plans of action that rise from this research. Evidence is crucial and that is something that has come home to me here, but we have to use the evidence to make sure we have intervention programmes that work!

She agreed. And her colleagues post presentation were a little defensive to begin with, but soon realised that I was not out to attack, rather work together!

Meetings will take place on our return.

Again, I cannot stress enough how important these meetings we have between us for Wake Up Pune are... from all reports they can be frustrating, but they are so crucial in us finally working together.

The Wake Up Pune initiative is not just about the rise of civil society and the raising of awareness amongst the youth of the city, it is about NGOs like ours coming together to work for the issue we are so passionate about in our corners.

We are on to something here, and while there is a danger that we as Deep Griha might be doing most of the work - an observation by Avinash - it will not matter in the end if we can deliver together.

The Rally at least... if the funding for the Rock Show fall through.

Today I made two new friends... one is an ex sex worker and drug addict in Canada who walked up to me and asked me to roll her a joint because she doesn't know how to roll, and I must do because I had the drum and papers next to me. I obliged and what followed was a great hour or so with her and her friends. All ex drug addicts - cannabis is legal for HIV+ people here - and all HIV+. Cash spoke about her journey, and it was fascinating.

Then in the evening I helped Esther - my friend who runs the project with HIV+ women Masai in Kenya - with her stall. Her stall was next to the stall run by Asia Pacific Network of Sex Workers. I ended up being invited to a transgender party of Friday by Khartini Slamah a coordinator of APNSW who works in Thailand and Malaysia in framing policy for the rights of sex workers.

APNSW's slogan is: "We do not need sewing machines, what we need is human rights."

She and I spent a long time just talking about India - she is well acquainted with Sahara's project and has spent time in Delhi and Mumbai - and, again, fantastic.

I'm taking her out for a drink tomorrow.

Let's come back to Pune, and to Tadiwala Road in particular. We are doing so much that is right and innovative, but we lack the evidence base and this is required if our models are to be replicated elsewhere, or more to the point, if we are to advocate our core approaches.

We need more research students volunteering with us... and the report I plan to write about the way forward for us will include this and much more.

The 'Wake Up Pune' initiative is our starting point though, especially for the collaberative revalued response we need to plan for... and again, it is so frustrating being here, despite all I am learning.

Mo... a special thank you to you too, I left you out last time, and to Paul and to Sharon and everyone else - you too Meeta! - who help Sara and Smiler.

A thank you to Avinash and Pramila too and the team from Maya to Koli maushi. The confidence I feel about the project is because of how committed you all are.

I'm being nice eh... that's because I am so many millions of miles away.

Finally, Stevie if you are reading this, fuck!!! I wish you were back here! I need an artist on my return for the campaigns that will take place.

My pint before bed awaits...

The Chaos Within - XVI AIDS Conference

Yes, I am here.

When I arrived in Toronto via Moscow - long flight - we were greeted by the Canadian immigration who boarded the plane just to check if we were legit. The ripples of London reached here too.

Welcome to North America.

The first few days involved sleep and a gorgeous drive through the vine country of Canada to Niagara Falls.

Lots of water.

Now the conference... what can I say... on the first day, Sunday, immediately after registration I stumbled into a satellite symposium on HIV and disability. Stumbled on... well, I couldn't ignore it, especially after my experience with the questionnaire that I wrote about last time.

I stood up and admitted how embarrassed I was as a grassroots activist and interventionist - don't you love the jargon? - to have ignored the disabled community thus far. This was followed by some great networking on possible approaches. Paul you'll be proud of me.

Paul's parting words to me were, "Network, network, network."

Then came the opening ceremony... I have never felt so alone in a crowd of over 20,000. How wonderful it would have been if someone was here with me. Never again will I attend these conferences alone. I will ensure that I have with me another DISHA team member or volunteer. These experiences have to be shared.

I listened to Bill and Melinda Gates and of course Richard Gere amongst others.
Stigma emerged as a major concern. This will become apparent in the rest of this blog.

The gorgeous, yes gorgeous Canadian governor General of Canada spoke of the fact that 'AIDS has no boundaries' and that it gives a flying fuck about 'our prejudices.' (Her words were more temperate.)

We must act now.
We cannot remain indifferent.
To give up is unforgivable.
The battle against AIDS is a battle for life!

I sat there pondering my decision to leave Pune at the end of next year... I'll return to this momentarily.

Then came a young woman from Thailand who was born the year that AIDS was discovered: 1981.

She spoke articulately on Stigma and Discrimination (S & D) and suddenly said, fuck it!

"Stigma is irreducible. Accept it. Move on. Don't give it the power it craves."

I have sat through sessions just today on S & D that have echoed this. Don't give it the power it craves. Don't give a fuck.

And while I do agree... I have seen what S & D can do in our community of Tadiwala Road. I have seen and felt people die because of S & D. To say 'fuck it' is not always possible... it wasn't possible for Saraswathi. It wasn't possible for Anita. It wasn't possible for Milind. The list goes on.

Some parts of the world have moved on. We are still working our way through S & D. Hopefully one day we can come to a position that says 'fuck it' too. But not yet.

And talking about time scales... Dr. Piot who leads the UNAIDS unequivocally declared that while HIV/AIDS is 25 years old, it'll take at least another 25 to eradicate it. That too, if we all work together.

I sat there thinking of Tadiwala Road... about my decision to move on...

DISHA team, including volunteers, I know you are working hard on the 'Wake Up Pune' initiative, especially Sara and Smiler. I am grateful to you for it. But those of you who will be with us over this next year are in for a ride... there is no rest for the wicked... and wicked we must be!

Bill and Melinda Gates spoke on microbicide research and women centric initiatives are huge here. It is inspiring and Stephen Lewis - thank you Rachel for introducing me to the way this man thinks - is crucial. His thoughts will influence the way we work on the DISHA project. Not just where the empowerment of women are concerned but where holistic and sustained approaches are concerned that include the need for relentless advocacy.

The Gates couple also underlined that "Stigma has made AIDS harder to fight."

Stigma is cruel.
Stigma is irrational.

Their words. Guys our focus on S & D on the DISHA project is intuitive. It is a response to what we have experienced. It is not in response to an evidence based study. This is why it will succeed. It is real. We feel it. We smell it. We taste it.

Our clients feel it.
Our clients smell it.
Our clients taste it.

The 'Wake Up Pune' initiative is so crucial to this battle. There have been innumerable moments these last two days that I have wished that I could flip open my phone and ask Scotty to beam me up and then beam me down back to Pune. Back and forth. Forth and back. What we are trying to achieve is real guys, and more than ever I appreciate that a 'one off' event or couple of events are not going to achieve much. It is merely the beginning. We have to make Pune a HIV Positive City and the coalition of sorts that we are trying to put together with the 'Wake Up Pune' initiative is the first step.

We have to inspire organisations that work with us. We have to ensure that they deliver... and if Sara and Smiler's e-mails are anything to go by... then fuck, we have our work cut out.

This morning I sat in on a session with Bill & Bill: Gates and Clinton talking about the holistic approaches that are required if we are to make any headway against HIV/AIDS.

Holistic. Holistic. Holistic.

This conference has resulted in umpteen evaluations on the DISHA project in my head. We are good. We have achieved much! We have fallen down too. We have to pick ourselves up and approach from a different angle, especially on the stigma issue in the community. This includes the vulnerable members of the Tadiwala Road community that we have largely ignored: MSM, IDU, transgender, disabled... not on purpose... well... maybe deep down we felt that we were not equipped, although we have never admitted to this... no more excuses. We will find a way.

"We got to continue to fight stigma." We need "aggressive efforts against stigma"
William J Clinton

All sectors of the community must be reached! This is must be DISHA's first step against stigma... insidious layered stigma!

Here in Toronto S & D appears to be the obstacle at every turn. It is crucial that our response to S & D must be measured and integrate with the intervention required in our specific contexts. Yet, to ignore it, to pretend that we can overcome it by ignoring it, will only lead to more Saraswathis and Anitas and Milinds and an overflowing Sahara Care Home in Wagholi: A place of abandonment, death... refuse. And there are Saraswathis, Anitas and Milinds amongst the MSM, IDU, Transgender and disabled community too.

Finally today I attended the symposium on HIV/AIDS and Media - it is agonizingly difficult to attend every session, especially the concurrent sessions - and as you guys know the issue of media is something that we on the DISHA project engage with.

Gere was back with a distinguished panel of media leaders including the MTV head and Peter Mukherji who heads up Star India...

Gere and Mukherji in particular were very positive about the initiatives with media in India.

I sat there smoldering... its not that I didn't agree but especially where the print media was concerned we have seen quite a few articles that are absolutely fucking crap! Also the issue of the media's focus on sex... I pondered whether to take the floor... this was Richard Gere... and then I thought fuck it! I represent the DISHA/Sahara clients and team! I was up and raising my concerns and by then gave a fuck about what anyone thought. I have discussed these issues ad nauseum in Pune, why the fuck shouldn't I bring them up here.

I had Mr. Gere agree with me... I was laughing inside at how surreal this was on the one hand and fucking stony cold on the outside as I pushed him to clarify his position and also of course Peter Mukherji...

This is what this conference can do. It brings together frontline grassroots little people like me and gives us a forum to engage with those like Gere, Gates and Clinton... and more.

The big guns in the field are here guys. And there is no need to be overawed by this. Take them on. Talk to them. Push them. We know what the reality on the ground is... but make sure we learn too. They have much to teach us. Much! In a day and a half I have learned more than I ever imagined I would. The responses to this global pandemic are overwhelming... and it is crucial that we do not become overwhelmed, but rather focus on our communities and focus the responses we encounter here and adapt/tailor them to the responses/intervention required in a community like Tadiwala Road and the city of Pune.

Like I said earlier DISHA team and volunteers who will be with us long term... we have much to do.

Miss you all.

On with the dance!

The Chaos Within - Wake Up Pune

This morning we had a meeting of HIV/AIDS NGOs for the Wake Up Pune initiative. It was a focused meeting with Project Concern International (PCI), Muktaa, Sahara Aalhad, NMP+ the positive people's network in Pune, HRLD - Human Rights and Law Defenders, Sarva Seva Sangh run by the Roman Catholic diocese, Soudamini trust that focuses on HIV+ women and children and Deep Griha Society's DISHA.

It has begun. Organisations are coming together to work for the issue, and work together for people living with and affected by HIV/AIDS.

The first Wake Up Pune rally has been planned for the 10th of September 2006. The plan is to mobilise thousands across the city and have them converge on MG Road on Sunday evening. The Walking Plaza on MG road on the weekends is an ideal forum with which to reach out to Pune. It is our first step in shaking Pune awake and letting them know that HIV/AIDS can no longer be ignored. People Living With and affected by HIV/AIDS can no longer be marginalised!

It was a good morning.

This afternoon I received an e-mail from Shodhana Consultancy which currently works with UNICEF Mumbai on the project on "Social Exclusion." They had a questionnaire for us to fill on HIV/AIDS and the disabled...

Their questions began with:

Do you think that disabled people might be at risk for HIV/AIDS?

Do you think that disabled people are at greater risk for HIV/AIDS than non-disabled people?

My immediate reaction was to answer yes, Of course! The mentally disabled in particular can be taken advantage of, as not all of them understand issues of sex and sexuality. Just yesterday in the Indian Express newspaper we read of a ward boy in Kerala raping a woman who had suffered 65% burns in the hospital toilet. She was physically disabled and had to undergo further trauma within hours of her self-immolation.

We can be evil.

We can and have and will take advantage of the disadvantaged.

Disabled people including disabled children in particular have and will be taken advantage of... We had a three year old girl in our crèche who was raped in a nearby public toilet. The stories are endless.

The questionnaire went on to ask what we as a organisation was doing... What intervention programmes if any were we running for disabled people in context of HIV/AIDS awareness and education.

It was a painful few moments as Shazma and I wrote 'NO' and 'Don't Know' in response to 99% of the questions.

We don't even know where to begin and we honestly said as much at the end of the questionnaire. Yet, even as I was writing these last few comments I thought about the kids that greet us every morning as they await the bus to take them to the Kamayani Institute for mentally disabled children and young adults. Kids from the Tadiwala Road community that are vulnerable to the predator that man can be. The Tadiwala Road community, Ramtekadi and Bibwewadi communities are our communities. Communities that we have worked in for almost 30 years.

Empowerment of the marginalised... that is how Deep Griha's mission statement begins.

The battle is on many fronts, and the battles have to be fought. Complacency is endemic in the NGO sector. And even when new ideas for projects come thick and fast we have to ensure that we do not forget the most vulnerable in our communities.

DISHA is well placed but almost everyday we realise there is more and more and more that needs to be done.

If we come together like we have then we will achieve the more, and then the more that comes after.

Wake Up Pune... yes... but fuck, we need to wake up too.